Tag: diabetes dad

Are You a Mom to a Young T1D?

Posted on | by tomkarlya | 2 Comments on Are You a Mom to a Young T1D?

Dear Mom (Dad’s Too),
I have a message for you.
You may not know me……you may have read something I may have had something to do with regrading diabetes…….you may not have read anything at all. In 1992, at the age of two, my little girl was diagnosed with type 1 diabetes. I have stood in your shoes. I asked the same questions you ask every day since diagnosed. Questions you ask even today.

I asked if she would have a normal life in school? Would she date? Would she have friends? Could she go to parties? Could she trick or treat? Could she ever be allowed to go anywhere without me, or her mom? Would she get a driver’s license? Would kids make fun of her? Would she be embarrassed about her diabetes, and tell no one? Would she graduate college? Would she get a job? Would she do what she really wanted to do? Would she EVER meet the right person? Would she be looked upon as damaged goods? Would she ever get married? Would she ever have kids?

Let me start with the last question, first. I just found out that my daughter is pregnant. In July of this year she will give birth. She and he husband could not be happier, we are a close second on that happiness She just graduated with her FNP (Family Nurse Practitioner) and will open her own practice. Do you see the trend occurring? Her life was a simple philosophy, if she wanted to do it whatever it was, we not only encouraged her to do everything and anything she wanted, but helped map a roadway to get there.

We did not have the technology that is available today so yes, we worried about her dying in her sleep. People d today too but we had none of those tools back when. If needed….it was a pot of coffee and determination. We worried about her going so low in a place that we were not, that we thought she would lapse into a comma. We were frightened. We were scared. We knew little. We. Just. Did. Not. Know.

But we did know this.

Learn this mom. Learn it now. Learn it good. There is an equalizer to your child’s life ahead with diabetes. That equalizer is education. Learn everything you can about this disease. Social media is a good place to chat, but it is not the baseline for your education. There is no shortcut either. Read. Learn. Ask Questions. Ask again. Read again. Read more. Find out the correct answers from professionals.

Become a sponge. Absorb everything. Give your child every opportunity to forge the life they want. To conquer any mountain. When our daughter wanted something we figured out a way to say yes. Some times the only reason to say yes was that she asked; and we also knew when there were 30 other reasons why it may not have been such a good idea. But the one reason out weighed the other 30 each and every time, she wanted it, and there was no earthly reason to say no.

We also knew that she lives with a disease. And no matter what we could do, it may take her away from us. We could not do anything about that. But we knew that should that happened we would have to be able to look ourselves in the mirror and answer 2 questions: 1. Did we learn all we could to empower her; and 2. Did she live her life as she wanted. We did that.

After that we walked through life in God’s hands.
Even without diabetes, we all would have to live that way, wouldn’t we?

Then our son was also diagnosed at age 13 in 2009. And we learned all over again. Butt our kids are worth it, right. He was bought up on no boundaries as well,only his imagination. Two years ago, his company moved him to their corporate headquarters and he was one of the youngest person to ever be in his division.

No Boundaries.

In July my daughter will give birth to our grandchild. She has done every single thing in life she has wanted thus far. We know how blessed we are. We also know that there was much work by all of us to get here today. Your child will get there too. Kaitlyn said to all of us in an interview she did with a television news station years ago, “Diabetes is what I have………it is not who I am”. Amen little girl, Amen indeed.

And that same little girl who taught us years ago is the woman who will make us grandparents in July. Pretty cool…….huh?

Learn that mom reading this, your child’s world awaits.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Different Races, All Trying to Help

Posted on | by tomkarlya | 3 Comments on Different Races, All Trying to Help

A few people I know attempted to do something this weekend that, I guess, one could say that they had no business to attempt.  Both had to do with feats of running.  Both have ailments or other reasons why their bodies are not meant to run.  I have no idea how long, or even if, they trained for these runs.

My cousin trained for months to run in the NY Marathon last November in New York City.  My cousin’s training was being done at age 77.  He did it all under medical supervision and he ‘did it right’ from all intent and purposes one undertakes these endeavors.  Just prior to the race, while training, he collapsed in the street and a passerby performed CPR, it saved his life.  It’s been a haul but my cousin is a fighter and the closeness he has to his own family, well that makes the fighting worth it.

He was running to bring attention, education, and a few bucks to Autism which has hit out family, and hit it pretty hard.  The other two I referenced at the onset were doing it for diabetes awareness, education, and a few bucks to a foundation in which they believe in for diabetes, our family knows about that as well..

THEY ARE ALL, HEROES.

They chose to live by the phrase, Just Don’t Do Nothing.  Make no mistake about it, just because they may not have made it to break the ribbon at the end, they accomplished their goals.  In fact, in one case, her story was so moving I donated to her cause.  Had she not been challenged beyond physical  endurance; I never would have known her story.  Her story pulled at my heart. Her apologetic tone of being unable to make it to the finish line captivated my attention.  As I read her story my mind was continually filled with one of the greatest lines ever uttered in movie cinema history from Lord of the Rings, “…….my friends, you bow to no one!”

Anyone who decides in their head, I will attempt this, crazy as it sounds, they get my attention and they should get your attention as well.  Someone else has REALLY peaked my attention recently because she is attempting to do something almost as impossible as well.  She is running a different kind of race and in my humble opinion, we probably should pay attention.

Quinn Nystrom is running for Congress in Minnesota.  She is an author (If I Kiss you, will I Get Diabetes), a tireless advocate for diabetes, and a person who has lived with the disease.  Quinn has held elected office as the youngest person ever elected to the Baxter City Council.  One of the reasons she is running for Congress is because of unaffordable health care, she knows firsthand about the cost of insulin.  So many times we tout and shout, “If only we had an inside to Washington.”  Well now is your chance.  I’m doing what I can to help Quinn get elected, because I cannot vote for her.  But I also KNOW WE NEED A VOICE in Washington DC; Quinn’s voice.  Go to https://quinnforcongress.com/ and figure a way you can help also.

All of these individuals, although running in completely different races, are running because they cared enough not to sit on the sidelines.  I’m in awe of their efforts and I know there are so many more trying to make a difference.  But the only way to get in the race, is to start running.  What will you do this year?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Living Life is so Much More than Diabetes…..NEVER Forget It!

Posted on | by tomkarlya | 1 Comment on Living Life is so Much More than Diabetes…..NEVER Forget It!

Life was normal. Perhaps a trip shopping or a relatives house. Your child starts to complain about stomach aches, nausea, but the flu has been going around.
It’s just the flu honey.
Yeah, the flu I’m sure.
But the clock is ticking.

Your child is home from school.
This is different, honey. I should take her to the doctor’s office.
Tomorrow, we’ll see tomorrow.
But the clock is ticking.

If you have a child with T1D, the first two paragraphs should have caused a little anxiety. Perhaps you are brand new. Perhaps you have been ‘at it’ for years.
It’s diabetes. It’s the way it is. It’s the way it’s going to be until someone untangles this mess and comes up with a cure.

Stop blaming the pharma companies for ‘hiding a cure’, they’re not. If we have learned anything it is that if one entity is ‘doing it’, others also know how. So ‘hiding it????–not so easy. Diabetes is just that complex. But many are working on it. Many. Technology of today is so much better than the technology of yesterday, and tomorrow’s will be THAT MUCH better. We’ll get there. I’m more sure of that now, than when we started this journey on September 26th, 1992

So buckle your seat belt and keep the focus where it needs to be. On your child? Not necessarily just on your child but on getting your child back up and back as close to life as it was before diagnosis. That’s our job, as parents. If you are divorced, hear me, that is still our job as parents. Nothing matters more.

The psyche of diabetes is as important as the management of it. Get your child back up and back into life. Be strong, but understanding. Let them lean but don’t let them sit. Get them back to where they were. That’s our job as parents. Cry? Sure but not in front of them. If they want to cry, let them. Guide them.

I have known thousands of families where diabetes entered the household. The kids have done incredible things to fulfill their dreams. There are always ‘what about—what about’, that ‘might happen’ but only take them on when you have to. Otherwise, let them do what other kids do……after all, that’s what they are……..kids. Upon diagnosis, they did not turn into glass, don’t treat them as if they have. Hear me clearly, do not just poo-poo this disease, it’s a monster. But all monsters can be trained. Train it, or it will own you. Don’t let it. I’m certainly no smarter, better, nor stronger than you. I asked the questions of those who have been through it. I found answers.

My oldest son is living his dream. Not your dream. Not someone else’s dream, His dream. He runs into fires when others run away. He works patrolling the grounds of NY State. He works hard, he plays hard. He gives back. He is where he wants to be. My youngest two children each have type one diabetes, and you know what, they’re living their dreams as well. They all have someone in their lives to share everything. They are all living life.

That’s the goal. It takes work. But as I said, I’m no smarter than anyone else but we made sure our kids had choices. They made good ones. Let yours do the same. Don’t let one ounce of your precious energy be wasted in any other way. Period.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Goodbye 2019—-Hello Modern Roaring Twenties

Posted on | by tomkarlya | 1 Comment on Goodbye 2019—-Hello Modern Roaring Twenties

The quiet was very loud in the waiting room.  The employee awaited the turn to ‘face the music’.  2019 was not as nervous as when he heard the yelling when 2018 left last year, the yelling was scary as the Boss rarely yelled, but yelling occurred as 2018 was ushered out….it was left to 2019, and 2019 knew that the year was over and failure was the result.
Send in 2019, please.  The intercom on the receptionist’s desk echoed.
The Boss will see you now, she ventured a partial smile.  2019 stood and walked toward the door and opened it with conviction.  Hi Boss, it’s me.
C’mon in 2019, come in.

2019 took a chair and both The Boss, and 2019, sat for a few minutes without saying anything. 
2019, not a good year. Really not a good year.  I really want to get back to being so annoyed at you new years because no cure has yet to be found, instead I find myself just so angry at you all not getting insulin into people’s hands.  Some really good local legislation and some extremely powerful hearings,,,,,,but, we have yet to move that dial.

2019 spoke up, I feel like some progress was made, especially in a divided capitol who certainly have other thingson their minds.  I….

The Boss stopped 2019.

2019, I am not here to listen to your side of the story.  You failed in finding a cure.  You failed in resolving the insulin issue and quite frankly I’m not as angry with you as I was with 2018 for the only reason, I have become calloused to the pain you all keep coming and dishing our every year.  You did not accomplish one thing you set out to do.  The technology that other years touted as hugely successful, broke down as well.  I was encouraged, again, by the one thing that encourages me each year that comes in my office, is ushered out, and a new one ushered in. DO you know what that is 2019?

I’m pretty sure it is those impacted by diabetes.

Exactly right 2019, it is the people impacted by this disease.  The people who live with diabetes and graduate school, become professionals, do the plays in their schools, play sports, hold a job, get married, have kids, get good grades, play with friends and for all intent and purposes they live their lives to the fullest.  It is the researchers who constantly look for that needle in the haystack because they believe a cure is out there and worth looking for.  It is the genius minds that are not content with the status quo in management technology and continue to improve health care.  It is the legislatures who continue to fight to bring the insulin costs down.  It’s those who believe that diabetes will JUST NOT DUE in their lives 2019.  The keep me at this job.

2019 stood up.  I understand.  It is my truest hope that this new decade arriving at midnight is the modern ‘roaring twenties’ in all things diabetes.  Sorry I failed you boss.

And just like that 2019 left.  The Boss put his hands behind his head and smiled at the ceiling; Hmmmmmmmmm Roaring Twenties in all things diabetes, I like that.
He buzzed his receptionist; Send in 2020, the modern roaring twenties in diabetes starts now.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Twas the Night Before dChristmas 2019

Posted on | by tomkarlya | 1 Comment on Twas the Night Before dChristmas 2019

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2019

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; CGMs enough to fill up a bin,
All so new, fast, and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

Some say a crime and even a sin
Outrageous price for one dose of insulin
The community raised voices loud and concise,
Costs are too far and need to lower in price.

The voices were loud and the voices were clear,
We will shout as one, we all have no fear.
Insulin is not a luxury, stop causing such strife,
Insulin for all it is needed for life.

Many things were good, many things were fun,
Diabetes awareness campaigns are still being done.
The word is important for everyone to hear,
Capitol Hill hearing our voices, we’re getting in gear.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

When you look outside at the fresh fallen snow,
so many are doing, so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, launch it, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they all get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Holidays, Diabetes, Your Child, Relatives — Feeling the Stress?

Posted on | by tomkarlya | 3 Comments on Holidays, Diabetes, Your Child, Relatives — Feeling the Stress?

So you are home enjoying the holiday preparations when your doorbell rings. You answer the door and the deliveryperson is there with a box from a relative. The size of the box surely peaks your interest and you carry your new found delivery to the kitchen table and carefully open the box. As you open it you see the contents inside: a load of goodies that sort of resembles the picture; what goes through your mind?

Options:
1. What a lovely gift, so nice of them to think of us?
2. They know we have a child with diabetes, why would they do something so hurtful?

Which one did you choose?
If you chose the first one, go about your day.
If you chose the second, pull up a chair.

If you chose the second, your feelings are real, don’t just push the aside. We, as parents, are constantly asking ourselves, “Why do others not understand what we go through?” With the upcoming holidays, people will say and do things that, very well, might enrage you with their actions or words.

Since you cannot do anything to prevent people’s words or actions, you need to create a buffer for yourself or you will be pulling your hair out before the turkey cools. First point; I have learned after 27-some-odd-years at this that no matter what the words said or the actions done, believe it or not, people’s comments are because THEY THINK they are helping.

When any of these occur, which of course, are usually said in the presence of the entire family:
>We are having gravy, sweet potatoes, mashed potatoes, and stuffing and I know little Susie has to be careful of carbs so I cooked her her a stringbean for dinner.
>Kids help yourself to the cookies and candy but remember Little Johnny can’t have any…….Johnny I have a Ritz Cracker with cheese for you.
>Oh Honey (being said to you) are you sure she should eat that with her disease?
>I have candy canes for each child and Johnny I know you cannot eat candy canes, so here is a beef-jerky to chew on.

Okay—-over the top, I know, but if you read these and smiled a little, you are on your way to realizing how you handle the clods when they say the wrong thing. Do not feel the need to correct them with a lecture at this time (and you’ve already nixed hitting them with Christmas Tree branch with the angel on it) but with a few words and a genuine smile you will accomplish your goal. “Really it’s okay, Johnny knows how much of the candy cane he can eat….please give him one too.”
“Dinner will be fine, we’ll help little Susie, thanks.”

Short and sweet. If they do not know the right thing to say or do before you arrive for the holiday festivities, I promise you they are not going to learn it on the day the family is gathering. SO YOUR JOB is just to diffuse the situation and move on. Don’t see ‘Christmas Red’ because of a stupid statement because here’s the thing; it’s not as important for them to know as it will be important that you and your child know. And even more important to know that your child is, once again, reminded that you have their back.

If they see you getting upset, they will too. If they see you getting angry (and hear me on this) they will think they are causing the strife and not your family member. It will impact them as well, THIS you do not want, ever!. Take the high road. Smile. Be straightforward, direct, But make it quick and move on. If you do this, YOU CONTROL THE SITUATION AND THE OUTCOME. And THAT is why you will feel better about the situation, and yourself.

In our house, we love the Christmas Holidays. They are a BIG deal, My daughter, since the day she could unwrap a Christmas gift, truly and honestly gets excited about opening gifts——even her stocking stuffers. Her face is priceless and genuine when she opens her gifts——she has ALWAYS been this way for all 29 years of her life. When Jill or I were feeling that ‘Christmas Red’ coming to our face, we would think of her eyes, her face, her smile—–THAT WAS IMPORTANT to us to maintain, no matter what. And no idiotic or misguided statement/action from anyone was going to ruin that.

You may not succeed right away but in time, your persona will take on a confidence that will demand that everyone check with you privately and in the correct one-on-one setting it needs to be. Jill’s very presence in the vicinity of my daughter (and then later adding my son also) demanded that anyone wanting to know anything diabetes related ………..came to her first. And they did!!!!!!

This came about because Jill has an electric smile, but when she said something about our children’s diabetes lives, one knew, quite frankly, it was law. I promise you, you will get there but don’t give into just getting angry, because you will get frustrated, and feel like you are not in control of the situation. You cannot do anything about what people say or do, but you can do something how you hear it. So when the Grinch shows up, you control the outcome—hold up a piece of mistletoe and kiss them on the cheek, and let them know who is in charge.

Happy Holidays
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.